Members’ news and announcements

EURORDIS member groups are welcome to send news and announcements to be published on this page.

Does your association have an event to communicate? Send us your news.

Get Your Happy On

Rare Diseases South Africa (RDSA) has started a social media initiative encouraging people with a rare disease, family members, loved ones and friends to post a picture about something that made them happy each day, for 100 days. Remember to hashtag #100DaysOfRare, #RareAndHappy and tag them @RarediseasesSA on their Facebook and Twitter.
More Information

Multi-national portal to provide advice and support services for the parents of children born with limb disabilities

Dysnet, the Online Dysmelia Community, has launched a multi-national portal to provide advice and support services for the parents of children born with limb disabilities:

Findacure is launching 2nd round of peer mentoring programme

L’ARSLA lance son premier concours de recettes adaptées aux patients atteints de SLA.

Déposez dès maintenant votre recette ! Pour tout savoir sur le concours : rendez-vous ici

March 2017

6th AKU Patient Workshop

18 March 2017, London,

Launch of the Alpha-1 European Expert Group Recommendations

22 March 2017, European Parliament, Brussels, to register email 

Journée ALIS (Association du Locked-in Syndrome)

24 March, Boulogne Billancourt, France

April 2017

World Haemophilia Day

19 April 2017, more information

Tagung Usher Taubblind Forum Österreich

21 April 2017, Informations- und Vernetzungsveranstaltung, mehr Infos unter:

APIPD Gala de Charité

21 April 2017, Saint-Ouen, France, more information

Relais 22 - journée d’information familiale

22 April 2017, Bruxelles,

Run the London Marathon for AKU

23 April 2017, London, UK, more information

Engaging your community for fundraising' workshop

28 April 2017, London, UK, more information

May 2017

Assemblée Générale Annuelle de  l'association Les Ptits Courageux

1 May 2017, Saint Pardoux,

The Cardiff Rare Disease Showcase

4 May 2017, Cardiff, Wales, more information

XII Encuentro Nacional de Familias MPs

12-13 May 2017, Logroño, Spain,

European members’ workshop (focus on good practices and proposal writing skills)

26-28 May 2017, Madrid,

June 2017

BDFA Starlight Ball 

9 June (awareness day), Hampshire, UK, more information and tickets

EHC Round Table on Orthopaedic Aspects in Haemophilia Care

27 June, Brussels, Belgium, view the programme here

July 2017

3rd World CDG Conference

15-16th July 2017, Leuven, Belgium, more infromation

September 2017

International Ataxia Research Conference

27-30 September 2017, Pisa, Italy,

October 2017

14th International Conference on Thalassaemia & Haemoglobinopathies & 16th TIF International Conference for Patients & Parents

October/November 2017, Germany, more information

November 2017

International Primary Immunodeficiencies Congress (IPIC) 2017

8-10 November 2017, Dubai, UAE,

The Batten Disease Family Association conference

24th-26th November 2017, Stratford Upon Avon, UK,

January 2018

European SMA conference, “SMA: research and clinical symposium”

25-27 January 2018, Poland,

This page is reserved for news, events & announcements concerning Eurordis’ member organisations.

To submit your announcement, e-mail:
Anja Helm
Manager of Relations with Patient Organisations


Cette page est réservée aux actualités, événements et annonces des membres d’Eurordis.

Merci d’envoyez votre annonce à:
Anja Helm
Manager of Relations with Patient Organisations

Esta pagina esta reservada para anuncios y acontecimientos de los miembros d’Eurordis.

Por favor, mande su anuncio por e-mail a:  
Anja Helm
Senior Manager of Relations with Patient Organisations



Diese Seite ist für Nachrichten, Ereignisse und Anzeigen von Eurordis Mitgliedern.

Anja Helm
Senior Manager of Relations with Patient Organisations


Esta página está reservada a notícia

s, acontecimentos e anúncios relativos às organizações associadas da EURORDIS.

Envie o seu anúncio por correio electrónico para
Anja Helm
Responsável pelas Relações com as Organizações de Doentes da EURORDIS


Questa pagina è riservata a notizie, eventi e avvisi di attività organizzate dai membri di EURORDIS.

Per presentare il vostro annuncio:

Indirizzo e-mail:
Anja Helm
Direttrice delle relazioni con le Organizzazioni di Pazienti


Page created: 03/12/2009
Page last updated: 29/03/2017
Die Stimme der Menschen mit seltenen Krankheiten in EuropaEURORDIS Die internationale Stimme für Menschen mit seltenen Krankheiten. Rare Diseases International ist eine EURORDIS-InitiativeRare Disease International Ein moderiertes mehrsprachiges Forum, das Patienten, Familien und Experten zum Erfahrungsaustausch zusammenführt. RareConnect ist eine EURORDIS-Initiative RareConnect Eine internationale Aufklärungskampagne, die jedes Jahr am letzten Tag im Februar stattfindet. Der Tag der Seltenen Erkrankungen ist eine EURORDIS-InitiativeRare Disease Day Nehmen Sie am größten Zusammentreffen von Interessenvertretern für seltene Krankheiten in Europa teil und besuchen Sie die zweijährliche Europäische Konferenz für Seltene Krankheiten und Orphan-Produkte (ECRD). ECRD ist eine EURORDIS-InitiativeEuropean Conference on Rare Diseases